SynthesisJournal of neurology2023
Quality of life, health-related quality of life, and associated factors in Huntington's disease: a systematic review.
Synthesis in Journal of neurology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.
- Health state utility estimates for value assessments of novel treatments in Huntington's disease: a systematic literature review.Health and quality of life outcomes · 2024Pooled it
- Psychological interventions for individuals affected by Huntington's disease: effects on depression, anxiety, and emotional well-being.Journal of community genetics · 2026Article
- Development and validation of the first needs-based quality of life measure for individuals with manifest Huntington's disease.Journal of neurology · 2026Article
- Modifying Neuropsychiatric and Motor Trajectories in Huntington's Disease Through an Integrated Neurobehavioral Clinic Model.Neuropsychiatric disease and treatment · 2026Article
- Huntington's disease caregivers: A qualitative exploration of caregivers experience.Journal of health psychology · 2026Article
- Epidemiology and economic burden of selected rare genetic diseases in Germany - a claims database study.Orphanet journal of rare diseases · 2025Article
- Living with Risk, Aging with Uncertainty: A Narrative Review of Health and Genetic Vulnerability in Huntington's Disease.Biomedicines · 2025Review
- Specific contribution of cognitive and motor impairments with functional capacity and dependence in Huntington's disease.Journal of neurology · 2025Article
- Acceptance and commitment therapy with Huntington's disease: A narrative review and case report of a caregiver-assisted intervention.Journal of Huntington's disease · 2025Review
- Huntington Disease Health Related Quality of Life, Function and Well Being: The Patient's Perspective.Neurology and therapy · 2025Article
- Lipid Oxidation at the Crossroads: Oxidative Stress and Neurodegeneration Explored inAntioxidants (Basel, Switzerland) · 2025Review
- Emotional speech markers of psychiatric disturbance in Huntington's disease.Frontiers in psychiatry · 2025Article
- Sex-Specific Differences in the Progression of Huntington's Disease Symptoms - A National Study in China.Neuroepidemiology · 2025Article
- Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.Health psychology and behavioral medicine · 2025Article
- Development of a General Composite Scale (GENCOMS) for Progressive Neurodegenerative Diseases and Implications for the Assessment of Disease-Modifying Therapies.Neurology and therapy · 2024Article
- Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.Orphanet journal of rare diseases · 2024Article
- Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach.Frontiers in neurology · 2024Article
- Huntington's Disease Drug Development: A Phase 3 Pipeline Analysis.Pharmaceuticals (Basel, Switzerland) · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 3 institutions in 3 countries.
Funding
Abstract
backgroundHuntington's disease (HD) is a genetic, neurodegenerative disease. Due to the progressive nature of HD and the absence of a cure, (health-related) quality of life ((HR)QoL) is an important topic. Several studies have investigated (HR)QoL in HD, yet a clear synthesis of the existing literature is lacking to date. We performed a systematic review on self-reported (HR)QoL, and factors and intervention effects associated with (HR)QoL in premanifest and manifest HD gene expansion carriers (pHDGECs and mHDGECs, respectively).
methodsPubMed, EMBASE, Web of Science, and PsycINFO were searched systematically from September 17th, 2021, up to August 11th, 2022. Methodological and conceptual quality of the included studies was assessed with two appraisal tools.
results30 out of 70 eligible articles were included. mHDGECs experienced lower (HR)QoL compared to pHDGECs and controls, whereas mixed findings were reported when compared to other neurological diseases. Several factors were associated with (HR)QoL that might contribute to lower (HR)QoL in mHDGECs, including depressive symptoms, physical and psychological symptoms, lower functional capacity, lower support, and unmet needs. Multidisciplinary rehabilitation programs and a respiratory muscle training were beneficial for (HR)QoL in mHDGECs. DISCUSSION: (HR)QoL is experienced differently across the course of the disease. Although (HR)QoL is key for understanding the impact of HD and the effect of symptomatic treatment, there is a need to improve the methodological and conceptual shortcomings that were found in most studies, especially regarding the conceptual clarity when reporting on QoL and HRQoL. Suggestions for strengthening these shortcomings are provided in this review.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.